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FIRST NATIONAL FORUM ON SECONDARY FRACTURE PREVENTION Rydges Hotel, Sydney Airport, Sydney, NSW Meeting Report

FIRST NATIONAL FORUM ON - ANZBMS · 2015-12-03 · 1 First National Forum on Secondary Fracture Prevention Dear Colleagues, On 20 th November 2015, representatives from 22 organisations

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Page 1: FIRST NATIONAL FORUM ON - ANZBMS · 2015-12-03 · 1 First National Forum on Secondary Fracture Prevention Dear Colleagues, On 20 th November 2015, representatives from 22 organisations

FIRST NATIONAL

FORUM ON

SECONDARY

FRACTURE

PREVENTION

Rydges Hotel, Sydney Airport, Sydney, NSW

Meeting

Report

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First National Forum on

Secondary Fracture Prevention

Dear Colleagues,

On 20th November 2015, representatives from 22 organisations gathered in Sydney to attend the inaugural National Forum on Secondary Fracture Prevention.

This meeting was a direct result of a position Paper Published by the Australia & New Zealand Bone and Mineral Society (ANZBMS) and endorsed by a large number of

organisations and key stakeholders. The Paper drew attention to the appalling lack of effective osteoporosis care in Australia, and the shocking fact that 80% of patients who suffer a fragility fracture receive no treatment to prevent further fractures.

The case for addressing the lack of osteoporosis awareness, both among health professionals and patients, has been made repeatedly over the past 15 years. How-

ever, despite several ‘white papers’ published in 2001, 2007 and 2013, and even the inclusion of osteoporosis as part of the 7th Australian National Health Priority1 in 2002,

little or no progress has been made. One reason for this failure was the lack of a peak body that encompassed ALL stakeholders to speak with one unified voice.

The First National Forum on Secondary Fracture Prevention is a loud and clear call to action. The aim is to enable all stakeholders to develop a shared understanding of the key elements of a national approach to secondary fracture prevention, and to

forge a National Alliance to ensure strong advocacy for the uptake of this approach by Federal and State Governments. Similar Alliances have been formed overseas,

and particularly in the US, and these Alliances have been extremely successful in getting heard by Governments that would not otherwise have listened.

It is my sincere hope that this forum will mark the first meeting of a successful National Alliance that will go forward and conquer the unnecessary burden of

secondary fragility fractures on the ageing population of Australia. In the pages of this report I hope you find the evidence to convince you to take action.

In the words of Nelson Mandela:

“We know it well that none of us acting alone can achieve success. We must

therefore act together.”

Professor Markus Seibel, MD PhD FRACP

Immediate Past President, ANZBMS

1 Australian Institute of Health and Welfare, AIHW National Health Priority Area 7, Arthritis, osteoporosis and other

musculoskeletal conditions http://www.aihw.gov.au/arthritis-and-musculoskeletal-conditions/

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Contents FIRST NATIONAL FORUM ON SECONDARY FRACTURE PREVENTION .................................. 0

First National Forum on Secondary Fracture Prevention.................................................... 1

Participating organisations ................................................................................................. 4

Attendees ............................................................................................................................. 5

Introduction .......................................................................................................................... 5

Overview ............................................................................................................................... 5

Secondary fracture prevention: Key elements of the case for a national approach .. 6

Update on the burden of disease ..................................................................................... 6

Cost and quality of life burden ...................................................................................... 6

The current situation .......................................................................................................... 10

The osteoporosis care gap ........................................................................................... 10

The need for renewed action ...................................................................................... 12

National and international initiatives in osteoporosis care .......................................... 13

What are the elements for success of a Secondary Fracture Prevention

Program? ......................................................................................................................... 14

How do alliances in other countries operate? .......................................................... 15

Comments from the attendees ....................................................................................... 19

What are the key elements of a rational approach that this alliance wishes to

advocate for? .................................................................................................................... 20

Key elements of the ‘case’ for SFP action .................................................................. 20

Key elements of an Australian approach................................................................... 20

The need for a national alliance for secondary fracture prevention ............................ 22

What is the interest in forming a National Alliance for Secondary Fracture

Prevention? ......................................................................................................................... 22

The results from the Delphi process.............................................................................. 22

Domain 1: What is the purpose of a National Alliance for secondary fracture

prevention? ..................................................................................................................... 22

Domain 2: What should the National Alliance achieve? ......................................... 23

Domain 3 - How should the Alliance be governed? ................................................ 24

Domain 4 - How should the Alliance be funded? ..................................................... 24

What is the purpose, mandate and nature of an alliance?.................................... 25

What is critical to the success of an alliance? ........................................................... 25

What are the converging interests or issues for members of the alliance? ........... 25

Designing a national alliance .............................................................................................. 27

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What do we want a national alliance to achieve? ..................................................... 27

Forging a national alliance to advocate for Secondary Fracture Prevention

Programs to prevent secondary fracture ................................................................... 27

Finalisation of the key operating principles for the national alliance ........................ 28

Designing an independent alliance for secondary fracture prevention............... 28

Alliance governance and management................................................................... 28

What kind of entity should the National Alliance be? .............................................. 28

Action Plan ............................................................................................................................. 30

Where to from here? ......................................................................................................... 30

Steering group ................................................................................................................ 30

Memorandum of understanding ................................................................................. 30

Next steps - Action items ............................................................................................... 31

Thanks and acknowledgements ..................................................................................... 31

Appendix 1 ............................................................................................................................. 32

MEETING AGENDA ............................................................................................................. 32

Appendix 2 ............................................................................................................................. 33

Alphabetical list of participating organisations ............................................................. 33

List of attendees ................................................................................................................. 34

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Participating organisations

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Introduction

The majority of Australians who suffer osteoporotic

fractures are neither investigated nor do they re-

ceive appropriate treatment. As a consequence,

many of these men and women experience further

fragility fractures, which we know lead to significant

morbidity (illness) and excess mortality (death).

This appalling lack of care exists in the face of widely

accessible and highly efficacious management

strategies to improve bone strength and prevent

falls. It exists despite repeated and loud calls for

action. Although osteoporosis has become part of

the 7th National Health Priority Area in 2002, little

progress has been made since then. This deficiency

was again highlighted by a recent ANZBMS Position

Paper, which called for a National Forum on

Secondary Fracture Prevention.

This forum has a single purpose: To forge an alliance

of all key stakeholders, which then translates the

clear evidence for the effectiveness of appropriate

interventions in reducing the risk of re-fracture into

tangible health benefits for Australians. Only

together do we have a strong voice to advocate to

government and formulate initiatives that will make

a real difference to our patients’ lives.

Overview

The purpose of this first National Forum was:

� To understand and review the evidence base

� To highlight the necessity for action

� To explore whether a National Alliance for

Secondary Fracture Prevention is the way

forward

� To ensure a National Alliance meets the needs of

individual organisations

� To have a clear plan to take the proposed

National Alliance forward

Attendees

Bruce Armstrong

Public Health Association

Heather Buchan

Australian Commission on Safety and

Quality in Healthcare Jackie Center

Garvan Institute of Medical Research

Fun Chan

Endocrine Nurses Society of Australia

Jacqui Close

ANZ Hip Fracture Registry

Australia New Zealand Society for

Geriatric Medicine

Melita Daru

Osteoporosis Australia

David Findlay

Australia New Zealand Orthopaedic

Research Society

National Health and Medical Research

Council

Kirtan Ganda

Australian New Zealand Bone and

Mineral Society

David Jesudason Royal Australasian College of Physicians

Mark Kotowicz

Endocrine Society of Australia

Colleen Langron

Australian Physiotherapy Association

Andreas Loefler

Australian Orthopaedic Association

Greg Lyubomirsky

Osteoporosis Australia Gabor Major

Australian Rheumatology Association

Paul Mitchell

Australian New Zealand Bone and

Mineral Society

Osteoporosis New Zealand

John Parikh Royal Australian College of General

Practitioners

Ann Robinson

Endocrine Nurses Society of Australia

Kerrie Sanders

Institute for Health and Ageing, ACU

Davor Saravanja

Australian Orthopaedic Association

Royal Australasian College of Surgeons

Markus Seibel Australian New Zealand Bone and

Mineral Society

ANZAC Research Institute

Natalie Stapleton

Dietitian Association of Australia

Katherine Stone

Carers New South Wales

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Secondary fracture prevention:

Key elements of the case for a

national approach

Update on the burden of disease

Prof Kerrie Sanders

Institute for Health and Ageing, Australian Catholic University

Cost and quality of life burden

The risk of sustaining a further fracture at least doubles for a person who sustained a

fracture within the last 5 years. In a cohort of over 900 people that had sustained a

fracture in the prior two weeks, 1 in 5 had sustained a previous fracture within the

past 5 years.

“There are strategies and treatments that can very easily be

implemented that will reduce the risk of subsequent

fracture.”

Government statistics hugely underestimate the burden of disease, as acknow-

ledged by the AIHW. The systematic underestimation can be explained in a number

of ways:

1. Osteoporosis is a silent disease until you have a fracture

2. AIHW take prevalence data from the National Health Survey – a self-reported

questionnaire

3. Quality of life (QoL) impact is not well estimated as it is measured from those

with a diagnosis of osteoporosis rather than fracture

4. Cost is also significantly underestimated as only those fracture patients

admitted to hospital and get the appropriate DRG code linked to their

hospital admission record. Notably, not all patients who sustain a fracture are

coded as such.

Other organisations also grossly underestimate the burden as they tend to rely on

AIHW statistics that are underestimates.

Based on government statistics and AIHW/ABS data it was estimated in a recent

report2 that there were 3,770 fractures associated with osteoporosis in 2012 with a

total cost estimate of $87 million. However, population-based research indicated

2 Arthritis and Osteoporosis Victoria (2013). ‘A problem worth solving’ Elsternwick: Arthritis and

Osteoporosis Victoria.

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that a more accurate estimate is likely to be 140,882 osteoporosis associated

fractures in 2012 (Figure 1), and $1.6 billion in direct costs.3

The Aus ICUROS4 study recruited over 700 Australian adults (aged ≥50) within 2 weeks

of a low to moderate energy fracture of the hip, wrist, humerus, vertebrae or ‘other’

fracture type.

The prospective study design included 18-months follow-up and looked at every

health and community service patients used that was directly related to their

fracture.5

Figure 1. Estimated fractures due to osteoporosis in Australia.

[Source: Osteoporosis costing all Australians A new burden of disease analysis – 2012 to 2022]

3 Osteoporosis costing all Australians A new burden of disease analysis – 2012 to 2022 4 AusICUROS - The Australian Study of Cost and Utilities Related to Osteoporotic Fractures 5 Abimanyi-Ochom et al. Osteoporos Int. 2015 Jun;26(6):1781-90.

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The study found that fractures significantly reduced health related quality of life; the

loss in HRQoL was sustained over at least 12 months. At a population level, the loss

was equivalent to 65 days in full health per fracture.

Results showed that:

� In total, 64% were admitted to hospital

� Hip fractures accounted for 44% of hospitalisations

� The average length of hospital stay was 7.5 days

� Average length of stay increased with age

� Approximately 73 % of total direct costs were related to hospital care

� Approximately 70% of costs related to people aged >70

� Acute hospital costs totalled $1.14 billion when extrapolated to the

population

� Direct treatment costs for hip fracture per person aged 70+ years was an

average of $32,000 per patient

The annual direct cost for fractures (including formal care) in Australia in 2012

totalled $1.76 billion.

There have been similar findings in the USA:

“In US women 55 years and older, the hospitalisation burden

of osteoporotic fractures and population facility-related

hospital cost is greater than that of MI, stroke, or breast

cancer.

Prioritisation of bone health and supporting programs such as

fracture liaison services is needed to reduce this substantial

burden.”6

Impact on health related quality of life (HRQoL) has been underestimated because

figures are based on the National Health Survey and on osteoporosis not fracture. It

has been found that in the 12 month period after a subsequent vertebral fracture

there was a significant decrease in four out of five HRQoL domains (Silverman 2001;

Figure 2).

6 Singer et al. (2015) Burden of illness for osteoporotic fractures compared with other serious diseases

among postmenopausal women in the United States. Mayo Clin Proc. 2015 Jan;90(1):53-62.

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Figure 2. Change in health related quality of life score for people with secondary

fracture (red) compared to those with no secondary fracture (orange).

“Secondary fracture is associated with significantly lower

quality of life.”

In 2012, it was estimated from AusICUROS data that 18,500 older Australians

sustained a secondary fracture after already sustaining fracture(s) in the last 5 years.

The cost of secondary fracture for those 18,500 was estimated at $223 million, with

47% of the cost due to hip fracture (Figure 3).

It has been estimated that the cost to avert 25%, or approximately 4,500, re-fractures

by treating 9,000 people would be $6.3 million, yet the cost to treat the same

number of re-fractures is $54 million. A small investment can therefore save a

significant amount, even with modest assumptions.

With the ageing population in Australia, the predicted number of fractures and re-

fractures is anticipated to rise steadily, along with associated costs.

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Figure 3. The cost of secondary fracture in Australia in 2012.

The current situation

Prof Markus Seibel

ANZAC Research Institute and ANZBMS

The osteoporosis care gap

In Australia, less than 20% of patients who suffer from a fragility fracture are

appropriately managed to prevent a further fracture.

Approximately 50% of people who present to hospital with a hip fracture have sus-

tained a prior symptomatic non-hip fragility fracture (e.g. of the wrist). These breaks

are an early warning signal for osteoporosis and their frequency and close associa-

tion with subsequent fractures highlights the need to investigate and treat patients

who present with a first fracture.

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In 2003, a study of 305 fracture patients at an Australian tertiary hospital found that

only 15.5% of patients received appropriate pharmaceutical care on discharge.7

Two further Australian studies of post-fracture management in general practice also

observed low treatment rates. A study by Eisman and colleagues8 included 88,040

postmenopausal women from 927 Australian GP surgeries and found that 29% had

at least one low-trauma fracture. However, of these only 28% were on any specific

therapy for osteoporosis. In 2008, Chen et al. studied 37,957 patients seen in general

practice in Australia and found that 17,754 had spine x-rays, of which 30.1% showed

evidence of vertebral fractures yet only 3.8% of those 17,754 individuals were

receiving current specific treatment for osteoporosis.

Chen and colleagues concluded: “This study has confirmed low rates of treatment

in primary care even in individuals who have already suffered a prior fracture or

have other risk factors. This study highlights the need for further exploration of barriers

to osteoporosis management in the primary care setting.”9

In Australia 75% of women aged over 50 years who qualify for osteoporosis treatment

are not receiving osteoporosis treatment (Figure 4).

We are up there with the world’s worst practice, denying treatment to those at the

highest risk of further fracture.

Figure 4. The proportion of treated women compared to the total female population

above 50 years eligible for treatment (2008). [Source: Strom et al. Arch Osteoporos 2011]

7 Nickolls C, Honours Thesis University of Sydney 2003 8 Eisman et al. J Bone Miner Res. 2004 Dec;19(12):1969-75. 9 Chen et al. Osteoporos Int. 2009 Mar;20(3):491-6.

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“Half of all patients who present with a hip fracture have

had another fragility fracture previously. These patients

virtually announce themselves, warning us that they are likely

to have a hip fracture in the future. Unfortunately, we don’t

listen. We fix their current fracture and send them home with

no further investigations or treatment plan.”

The need for renewed action

Up to four out of five people presenting with an osteoporotic fracture are being

denied effective fracture prevention. This is unacceptable practice as the risk of re-

fracture increases significantly with the initial fracture, and then again with every

fracture after that (Figure 5). The ageing of our population will have a significant

impact on the problem of re-fracture, further increasing the burden on the

healthcare system and the economy.

Figure 5. Risk of subsequent clinical fracture after first fracture, [Source: Center et al. 2007]

Up to 75% of those who were independent before a hip fracture have difficulties

walking or achieving their previous level of independent living within one year

following their hip fracture.

In the period 2002-2008, re-fractures accounted for 16,225 hospital admissions, with

an average length of stay of 22 days. This represents a substantial avoidable cause

of morbidity, mortality and cost.

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Why is this completely unacceptable?

� People fracture again

� People get sicker with each fracture

� People die from fragility fractures and their consequences

Why do we let this happen?

� Osteoporosis has no prestige

� Older patients with osteoporosis have no lobby group to advocate for them

� There is a lack of awareness among patients and health professionals

� Osteoporosis competes with other age-related disorders, and often loses out

� There is no peak body for secondary fracture prevention

Why have past initiatives failed?

� We haven’t been focussed enough

� We haven’t had every stakeholder on board

� We haven’t had funding

Despite three white papers in 2001, 2007 and 2013, and the inclusion of osteoporosis

as a National Health Priority (2002), actions on osteoporosis care and fracture

prevention have not matched the rhetoric.

“We have a consensus – something needs to be done.”

National and international initiatives in osteoporosis care

Paul Mitchell

“Hip fracture is all too often the final destination of a thirty

year journey fuelled by decreasing bone strength and

increasing falls risk.”

“There is a great opportunity to break the fracture re-fracture

cycle.”

There are a number of secondary fracture prevention initiatives worldwide.

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What are the elements for success of a Secondary Fracture Prevention

Program?

Identification

All men and women over 50 years of age who present with fragility fracture are

identified by the program.

Investigation

As per relevant local/regional/national guidelines, those at risk undergo BMD testing

and fracture risk assessment through evaluation of clinical risk factors for osteoporosis

and falls risk assessment.

Initiation

Where appropriate, osteoporosis treatment is initiated by the Secondary Fracture

Prevention (SFP) Program and referral is made to a falls prevention service.

Further elements for a successful SFP program include the presence of an individual

who coordinates the whole program so that patients are captured and managed

as appropriate. In the long term, audits and follow-up of patients are important for

quality assurance and to optimise adherence to treatment.

These worldwide initiatives have provided the evidence-base needed to scale to

the population level.

A meta-analysis published in 2013 analysed the outcomes from all of the different

types of secondary fracture prevention initiatives worldwide.10

The intervention types were divided into four groups, from A to D, with A representing

a ‘3i’ SFP Program, encompassing identification, investigation and initiation of

osteoporosis treatment where appropriate, and B representing a 2i SFP program,

and so on. The research demonstrated that type A and B models produced

significantly better outcomes (Figure 6).

“When we talk about SFP programs, the intense models that

undertake a lot of the organisational work to get that initial

care plan going, those are the ones that are delivering.”

10 Ganda et al. Osteoporos Int. 2013 Feb;24(2):393-406.

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Figure 6. Secondary fracture prevention programs: A systematic review and meta-

analysis [Source: Ganda et al. 2013]

How do alliances in other countries operate?

The National Bone Health Alliance (NBHA) in the USA is probably the biggest alliance

set up to date and is a public-private partnership. NBHA was established in 2010 and

has 29 non-profit members, a number of private sector members and 5 government

liaisons (CDC, Medicare, FDA, NIH and NASA). The collective reach of NBHA

includes 100,000 health care professionals and 10 million consumers.

The vision of NBHA is:

“To improve the overall health and quality of life of all Americans by enhancing their

bone health.”

Their aim is to address the priorities of the Bone Health Summit National Action Plan:

� Promote bone health and prevent disease

� Improve diagnosis and treatment

� Enhance research, surveillance and evaluation

A 20/20 vision of reducing fractures 20% by 2020 was established as the goal.

In the award winning “2 million 2 many” campaign, which involved images of a cast

mountain, the message was “If you or someone you love breaks a bone, request a

test” (Figure 7). A fracture prevention website called Fracture Prevention CENTRAL

was also established in 201311 with the aim of helping healthcare organisations and

professionals coordinate post-fracture prevention and care.

11 Fracture Prevention Central website www.FracturePreventionCentral.org

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Figure 7. NBHA 2 million 2 many campaign.

The NBHA is run by only three highly capable full-time staff, physically housed within

the US National Osteoporosis Foundation.

What has the impact of the NBHA initiative been?

The NBHA initiative was established in 2010 and data from the US National

Commission for Quality Assurance Annual Report shows that the impact has been

significant (Figure 8). The proportion of women receiving BMD testing and/or

treatment for osteoporosis has risen steadily since the introduction of NBHA initiatives.

Prior to this, rates were stagnant at around 20%.

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Figure 8. Post-fracture osteoporosis care in the United States: Proportion of women

aged 65 - 85 years who had bone mineral density (BMD) testing and/or treatment for

osteoporosis. HMO = Health Management Organisations; PPO = Preferred Provider Organisations.

[Source: NBHA]

“The proportion of people receiving appropriate care in the

US is escalating rapidly.”

In the UK, the Falls and Fracture Alliance,12 and in New Zealand, The BoneCare 2020

Alliance, are also making headway in their respective countries.

In New Zealand, in the space of less than two years, all relevant organisations have

worked together collaboratively to implement a systematic approach to hip

fracture care and prevention for older New Zealanders. There has also been a call

for the establishment of a NZ Hip Fracture Registry and universal access to SFP

programs by December 2015, an objective which is on track to be realised.

From the programs running worldwide, there is clear evidence that secondary

fracture prevention programs significantly reduce fracture risk:

12 UK Falls and Fractures Alliance https://www.nos.org.uk/about-us/public-affairs/falls-and-fractures-

alliance

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Australia: Concord FLS, Sydney

Repeat fracture rates over a 4 year period were 80% lower, with a rate of 4.1% in the

intervention group compared to 19.7% in the control group.

Canada: St. Michael’s Hospital, Toronto

Modelling of the FLS reported a 9% reduction of secondary hip fracture rates within

the first year of operation.

United Kingdom: Glasgow FLS, Scotland

Between 1998 and 2008, hip fracture rates in Glasgow decreased by 7.3%

compared to a 17% increase during the same time period in England, where only

37% of localities operated an FLS by late 2010.

United States of America: Kaiser Permanente

In 2008, a 37% reduction in hip fracture rates was reported for the population served

by the Kaiser Permanente Southern California system.

This corresponds to the prevention of 935 hip fractures in the year 2006 (2,510 hip

fractures were predicted by actuarial analysis, and 1,575 fractures were actually

observed).

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Comments from the attendees

“We now have adequate evidence that organised programs for secondary

fracture prevention work and are cost-effective.

We can now make a very strong case to government to say that this is worth

doing from a financial and health point of view.” – Bruce Armstrong

“In our study two similar hospitals were compared, one with a fracture liaison

service and one without. The re-fracture rate was reduced by 40% at the

hospital with the FLS.”

“We are targeting the most at risk people, we are actually achieving a

significant benefit.” – Gabor Major

“What seems to be clear is that there is a teachable moment after people

have fractured and it’s not very long, only about three months.” – Paul

Mitchell

“There is confusion among the general public about the terms bone break

and fracture – we need to be careful with terminology.” – Ann Robinson

“The best programs are ones which can engage patients and their carers” –

Katherine Stone

“Your return on investment is very favourable if you target women in the over

50 age group with a previous fracture.” – Paul Mitchell

“This issue needs to be on the orthopaedic surgeons’ agenda. We need to

think about follow up care. Osteoporosis needs to end up on the discharge

summary.” – Andreas Loefler

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Roundtable discussion

What are the key elements of a rational approach that this

alliance wishes to advocate for?

Purpose: To ensure that all Australians with a fragility fracture are appropriately

managed to prevent further fractures.

Goal: To widen the uptake of ‘best practice’ for the treatment of all patients with

osteoporotic fractures to prevent secondary fractures.

Objective 1

Address all patients who present to hospital with a fragility (minimal trauma) fracture

Objective 2

Widen this approach to general practice

Key elements of the ‘case’ for SFP action

Burden of disease

� Patients are readily identifiable

� Morbidity and mortality is avoidable, potential to improve quality of life

� Large potential to reduce costs

� Programs are worth investment both from a financial and health point of view

� Intervention timing is a critical variable

Key elements of an Australian approach

At the clinician level the Australian approach should involve a shift from immediate

fracture repair to a clear pathway that involves a multi-disciplinary team. Patient

involvement and education should be paramount, as should education of funders

and system decision-makers. There needs to be a clear goal and engagement of all

stakeholder groups. No single group can achieve this goal. We have the opportunity

to form an Alliance which benefits from the experience of others worldwide.

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“We’re trying to make sure that all of those people that break something

don’t break something else. And what we understand from the evidence

base is that probably the best way to do that globally is to have the

dedicated coordinator based systems that ensure that everything is done

that should be done” – Paul Mitchell

“The aim is to have a Secondary Fracture Prevention Program in every health

district that sees patients with osteoporotic fractures.” – Markus Seibel

“The way to get to a minister is through the public. If you miss out on teaching

people who are affected by this problem – that is patients and their carers –

you miss out on a huge opportunity to actually influence that minister.”

“From a strategic advocacy point of view… you miss a whole segment of

influence if you haven’t actually educated the public. The person who is

most invested is the person with osteoporosis, and their families and their

carers, as long as they understand. - Katherine Stone

“Do you, The Hon Sussan Ley MP, want to be known as the Health Minister

that implemented a program nationally that saved health expenditure, and

saved lives and saved disease burden? – That’s how it should be framed”

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The need for a national alliance

for secondary fracture prevention

What is the interest in forming a National Alliance for Secondary

Fracture Prevention?

The results from the Delphi process

Markus Seibel

The Delphi method was developed as a way to achieve consensus of opinion

among experts. “The Delphi method solicits the opinions of experts through a series

of carefully designed questionnaires interspersed with information and opinion

feedback in order to establish a convergence of opinion.”13

Between September and November 2015 the Delphi process was conducted

among a group of key stakeholders. This was a consensus process with Round 1

involving qualitative surveys (14 participants) and Round 2 involving quantitative

surveys (15 participants). The process was supported by Prof Helena Teede’s group

at Monash University, Melbourne.

Results were divided into ‘Agree’, ‘Neutral’ or ‘Disagree’ for analysis (although the

questions posed included strongly agree/agree and strongly disagree/disagree,

these were combined to simplify the analysis).

Domain 1: What is the purpose of a National Alliance for secondary

fracture prevention?

A National Alliance should enable member organisations to speak with one voice to

governments to maximise the likelihood of getting heard. Majority (12/13) agree.

A National Alliance should be explicitly focused on elimination of the current

secondary fracture prevention care gap through providing a mechanism to drive

the implementation of Secondary Fracture Prevention (SFP) Programs across

Australia. Majority (12/13) agree.

A National Alliance should engage with broader issues such as raising awareness for

osteoporosis, education of medical professionals and the public, guideline develop-

ment, and promotion of bone health across Australia. Majority (7/13) disagree.

13 RAND corporation www.rand.org

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Summary - Domain 1 – Majority views

The Alliance should:

� speak with one voice to governments

� focus on implementation of Secondary Fracture Prevention (SFP) Programs

� not engage with broader issues

Domain 2: What should the National Alliance achieve?

The National Alliance should strive to have members from all relevant professional

and patient societies in Australia. Majority (12/13) agree.

The National Alliance should achieve an agreement on a national system for

identification of people with a first fragility fracture and their referral for

consideration of reduction in risk of subsequent fracture. Majority (11/13) agree.

The National Alliance should achieve an agreement on a standardised approach to

evaluating risk of osteoporosis in older adults without known history of fragility

fracture (i.e. primary fracture prevention), and the optimal investigation and care

pathway for those identified as at high risk. Majority (10/13) disagree or neutral.

The National Alliance:

­ should urge the Federal government to implement quality improvement programs

to support Australian general practitioners to deliver clinically effective and cost-

effective long-term management of all fragility fracture patients.

­ demonstrate the cost-effectiveness of Secondary Fracture Prevention Programs to

State and Federal governments. Majority (12/13) agree.

The National Alliance should support implementation of the ANZ Hip Fracture Regis-

try and associated guidelines/ clinical care standards. Majority (10/13) agree.

Summary - Domain 2 – Majority views

The Alliance should:

� have members from all relevant professional and patient societies.

� achieve an agreement for secondary but not primary fracture prevention.

� achieve its goal through targeted advocacy of nationwide provision of

Secondary Fracture Prevention Programs by State and Federal governments.

� implement quality improvement programs to support GPs.

� demonstrate the cost-effectiveness of Secondary Fracture Prevention

Programs to State and Federal governments.

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Domain 3 - How should the Alliance be governed?

The National Alliance should be governed by a Board constituted of representatives

of member organisations. Majority (8/13) agree.

The National Alliance needs a strong but inclusive executive with defined tasks

allocated to subcommittees. Majority (9/13) agree.

The first thing to do for the National Alliance is to develop a constitution, a clear

strategic plan and terms of reference. Majority (9/13) agree.

The National Alliance should not be a separate structure but integrated under the

umbrella of ANZBMS and Osteoporosis Australia. Majority disagrees or neutral (10/13

neutral; 3/13 agree).

Within the first year of establishment, the National Alliance should seek to have

liaison officers/ points of contact representing the Federal and all State govern-

ments. Majority agrees or neutral (11/13).

The National Alliance should not invite Pharma companies to become members.

Majority agrees or neutral (12 agree or neutral; 1/13 disagree).

Summary - Domain 3 – Majority views

The Alliance should:

� be governed by a Board constituted of representatives of member

organisations.

� have a strong but inclusive executive with tasks allocated to subcommittees.

� develop a constitution, a clear strategic plan and terms of reference.

� be a separate, independent structure (5 for, 5 neutral, 3 against).

� not invite pharma companies to join.

Domain 4 - How should the Alliance be funded?

The National Alliance should be funded by

- contributions from member organisations only. Majority (8/13) neutral.

- philanthropic donations. Majority (11/13) agree.

- the government. No clear majority (5/13 neutral; 5/13 agree; 3/13 disagree)

The National Alliance requires a suitably skilled professional Executive Director, with

administrative support, to execute the aims of the Alliance. Majority (11/13) agree.

Summary - Domain 4 – Majority views

The Alliance should:

� have a skilled professional Executive Director with administrative support

� be funded by philanthropic donations and/or the government.

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Roundtable discussion

What is the purpose, mandate and nature of an alliance?

What is critical to the success of an alliance?

What are the converging interests or issues for members of the alliance?

The National Alliance for Secondary Fracture Prevention needs to be one united

voice to have a clear focus on secondary fracture prevention.

The National Alliance needs to target Commonwealth and State governments to

embed secondary fracture prevention within the health system, across primary and

acute care settings.

The primary driver of advocacy to government should be cost-effectiveness.

“I think it is very important that this organisation, if it’s formed, does not appear

to compete with the member bodies. If this Alliance can be funded by the

member organisations we remove that problem; it should be our first position.”

– Bruce Armstrong

“Osteoporosis Australia is concerned that the alliance potentially raises the

risk of competing for funding both from the government and the very

crowded market of the philanthropic foundations.” - Greg Lyubomirsky

The relationship between OA and The Alliance needs clarification. There is potential

for competition, however, it is clear that OA alone cannot achieve the aim by itself.

Governments do not want to hear from multiple organisations for funding of the

same condition. However, so far the government has not listened to the voice of

single, small organisations, such as OA. Hence, an Alliance that includes OA might

be more powerful and will increase the likelihood of securing funding and support

for secondary fracture prevention.

OA has been working for the past 2-3 months on a proposal to take to the

government. The proposal includes a nationwide audit of fracture liaison services.

However, the ANZ Hip Fracture Registry already has these data. Prof Close indicated

that in 2015, only one FLS has been implemented in Australia, bringing the national

total to a mere 20 services. The group needs to see the proposal to be submitted by

OA.

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The Alliance is a group that has a highly focused aim: to minimise secondary

fracture incidence. Its goals are aligned with the aims of OA.

The Alliance must remain independent. It cannot be part of one of its members;

otherwise it is not an Alliance and likely to lose its voice and impact.

It is pivotal that OA becomes part of the Alliance in campaigning for Secondary

Fracture Prevention, but remains an independent organisation for all its other

activities such as education, patient representation and osteoporosis awareness in

general.

“It is my position and the position of my Board that we will always support

the Alliance. I think it is a fantastic voice and a very powerful voice. But

we need to be very careful that it doesn’t create another burden on the

marketplace.”

“We’re happy to be part of this and make sure it is a success.”

- Greg Lyubomirsky

A small group will get together with OA in order to bring back an understanding of

the current situation and ways to resolve the issues around OA.

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Designing a national alliance

What do we want a national alliance to achieve?

A SWOT analysis was conducted with attendees in a roundtable discussion setting. A

SWOT Analysis is a useful technique for understanding strengths and weaknesses,

and for identifying both opportunities open to us and the threats we face.

Forging a national alliance to advocate for Secondary Fracture

Prevention Programs to prevent secondary fracture

Key results from SWOT analysis:

Current strengths to nurture

� One voice – agreed purpose/ shared vision

� The alliance is independent of any members

� Broad reach representation –

critical mass of organisations involved to ensure progress

� Good evidence and robust argument

� Strong clinical commitment

Current weaknesses

(plan to overcome)

� No agreed funding model � No dedicated resources

� No shared plan � Lack of expertise in advocacy

and securing funds

� Lack of some key organisations e.g. private health insurance

providers; AMA; radiologists

Probable opportunities to

exploit

� NHMRC – CFA falls & fractures

� Approach providers/ insurers e.g. Medibank Private, BUPA

� National Hip Fracture Registry –

expand? � Set own agenda

� Reach even more members

Probable threats (plan to avoid)

� Fail to work collaboratively o With OA o Asymmetry of

contributions o Perception of lack of

independence � Reliance on voluntary effort of

busy people (loss of focus/

burnout)

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Finalisation of the key operating principles for the national alliance

Designing an independent alliance for secondary fracture prevention

The principle is to stay independent of any specific member and therefore optimises

the opportunity for many to contribute. An Alliance cannot be part of one of its

member organisations.

The National Alliance will exist only for the purpose of ensuring Secondary Fracture

Prevention Programs become the standard of care in Australia. Once this has

happened, the Alliance will disband.

The National Alliance will not impinge on or threaten the role or funding of member

organisations.

The National Alliance will bring to bear research, clinical (acute & primary),

consumer, carer, insurer interests and the influence of their constituents, since none

can do this acting alone.

Alliance governance and management

A number of options exist and there was discussion around this topic.

Ideas included establishing a Board (as that was the preferred outcome from the

Delphi process) that governs the National Alliance.

The Board could take the following form:

� Organisations are members/ Organisations nominate Board members

� The Board has 3 permanent and 5 rotating members

� The Board has 3-4 executive positions (President, Vice-President, Secretary,

Treasurer) with two year terms

The Board will tackle the following key tasks:

� Development of a strategic plan

� Ensures all members views are taking into account

� Ensures all members are kept informed

The Board would oversee the work of an Executive Officer supported by a

secretariat (paid hours).

What kind of entity should the National Alliance be?

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Principles:

• Independent of any specific member

• No individual member has the clout to make Secondary Fracture Prevention

Programs happen alone.

• Optimises opportunity to contribute - every member can contribute

• Exists for the purpose that FLS become a feature of Australian healthcare; It

does not need to be an organisation in perpetuity.

• The Alliance is not here to impinge, take over or encroach on the territory of

any member organisation

Option A

The National Alliance is set up as a separate legal entity

� Constitution and operating capital provided initially by member organisations

� Able to contract, employ and secure funds.

Option B

Osteoporosis Australia is the legal entity (subject to OA Board approval)

� OA is the entity with who others contract and invest

� OA is the employer of the National Alliance paid staff

� OA ensures the National Alliance receives investment funding for secondary

fracture prevention initiatives.

The US Alliance is separately constituted, but physically housed within National

Osteoporosis Foundation (NOF).

The NBHA in the US is the one that has been instrumental in change. Its medical

voice is absolutely important but the consumer voice is pivotal, too. We must have

both. The strength in number is critical. If every single organisation here backs the

concept 100%, governments will take notice.

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Action Plan

Where to from here?

Steering group

A steering group needs to be established to start actioning the outcomes from this

meeting. The following attendees volunteered to be on the steering group:

� Markus Seibel (Chair)

� Bruce Armstrong

� Jacqui Close

� Mark Kotowicz

� Colleen Langron

� Greg Lyubomirsky

� Gabor Major

� Davor Saravanja

� Katherine Stone

Memorandum of understanding

Distributing a memorandum of understanding (MOU) to all member organisations

should be high on the steering committee’s agenda.

The Memorandum of Understanding will include:

� A clear vision and mission statement for the National Alliance for Secondary

Fracture Prevention

� Member organisations will be asked to affirm the following:

o To make a clear commitment to actively contribute to the National

Alliance

o To agree in principle to the vision, purpose and principles of the

National Alliance

What is critical to our success? What must we now focus our attention on?

• Deal with weaknesses early

• Design strategy for funding model / business model

• Consult other groups for input on how they are set up

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Next steps - Action items

Members:

– To provide MOU and terms of reference templates to Markus.

– To raise options and provide feedback from the OA board who meet during

the week beginning 23 November 2015 (Greg, Melita)

Steering Group:

– To schedule first meeting (Markus, Ivone)

– To work on and refine a clear vision and mission statement

– To determine any other organisations that should be invited/included in the

National Alliance

– To draft and disseminate MOU within the next 30 days

– Aim to have MOUs returned from organisations and the National Alliance

formed by February/March 2016.

Thanks and acknowledgements Prof Seibel extended his gratitude and thanks to all attendees. He also noted the

significant contribution of Ivone Johnson and Paul Mitchell who were co-organisers.

He thanked Lynnette Glendinning for facilitating the meeting and Ruth Hadfield for

record keeping.

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Appendix 1

MEETING AGENDA 10.00am SESSION 1 – SECONDARY FRACTURE PREVENTION:

KEY ELEMENTS OF THE CASE FOR A NATIONAL APPROACH

10:00am ● Welcome and purpose of the Forum Markus Seibel

● Overview of the program and introductions Lynette Glendinning

10.15am ● Update on the burden of disease Kerrie Sanders

10.35am ● The current situation – the Osteoporosis Care Gap.

The need for renewed action.

Markus Seibel

10.55am ● National and international initiatives in Osteoporosis Care Paul Mitchell

11.10am ● What are the key elements of a rational approach that this group

wishes to advocate for?

Table group and plenary

discussion

11.25am ● Summary of a national approach and the ‘case’ for it

11.35am Break

11.50am SESSION 2 – THE NEED FOR A NATIONAL ALLIANCE

12.10 ● What is the interest in forming a National Alliance for Secondary

Fracture Prevention?

­ results of the Delphi process ­ what is critical to the success of an Alliance? ­ determine the purpose, mandate and nature of an Alliance ­ clarify converging interests and issues for Members

Markus Seibel

Group discussion

12.45pm Lunch

1.15pm SESSION 3 – DESIGNING A NATIONAL ALLIANCE

● What do we want a National Alliance to achieve?

● How will we take the Alliance agenda forward – key elements of

strategy (including funding)

● What Alliance governance and management arrangements will

­ assure Members?

­ ensure effectiveness?

● Finalise the key operating Principles for a National Alliance

Table groups

Plenary discussion

3.00pm Break

3.10pm SESSION 4 – ACTION PLANNING

● Key elements of a Memorandum of Understanding

­ what needs further discussion

­ the process and next steps

4.00pm ● Summary and close

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Appendix 2

Alphabetical list of participating organisations

ANZAC Research Institute

Australia New Zealand Bone and Mineral Society

Australia New Zealand Orthopaedic Research Society

Australia New Zealand Society for Geriatric Medicine

Australian College of Nurse Practitioners

Australian Commission for Safety and Quality in Healthcare

Australian Faculty of Rehabilitation Medicine

Australian Orthopaedic Association

Australian Physiotherapy Association

Australian Rheumatology Association

Bupa Health Insurance

Carers New South Wales

Dietitian Association of Australia

Endocrine Nurses Society of Australia

Endocrine Society of Australia

Garvan Institute of Medical Research

Institute for Health and Ageing

Medical Oncology Group of Australia

National Health and Medical Research Council

National Hip Fracture Registry

Osteoporosis Australia

Public Health Association of Australia

Royal Australasian College of Physicians

Royal Australasian College of Surgeons

Royal Australian College of General Practitioners

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List of attendees

Bruce Armstrong Public Health Association

Heather Buchan Australian Commission on Safety and Quality in

Healthcare

Jackie Center Garvan Institute of Medical Research

Fun Chan Endocrine Nurses Society of Australia

Jacqui Close ANZ Hip Fracture Registry

Australia New Zealand Society for Geriatric Medicine

Melita Daru Osteoporosis Australia

David Findlay Australia New Zealand Orthopaedic Research Society

National Health and Medical Research Council

Kirtan Ganda Australian New Zealand Bone and Mineral Society

David Jesudason Royal Australasian College of Physicians

Mark Kotowicz Endocrine Society of Australia

Colleen Langron Australian Physiotherapy Association

Andreas Loefler Australian Orthopaedic Association

Greg Lyubomirsky Osteoporosis Australia

Gabor Major Australian Rheumatology Association

Paul Mitchell Australian New Zealand Bone and Mineral Society

Osteoporosis New Zealand

John Parikh Royal Australian College of General Practitioners

Ann Robinson Endocrine Nurses Society of Australia

Kerrie Sanders Institute for Health and Ageing, ACU

Davor Saravanja Australian Orthopaedic Association

Royal Australasian College of Surgeons

Markus Seibel Australian New Zealand Bone and Mineral Society

ANZAC Research Institute

Natalie Stapleton Dietitian Association of Australia

Katherine Stone Carers New South Wales

Apologies

Amy Bowen Australian College of Nurse Practitioners

Chris Dalton Bupa Health Insurance

Steven Faux Australian Faculty of Rehabilitation Medicine

Support staff

Lynette Glendinning Facilitator, Tempo Strategies

Ivone Johnson Executive Officer, ANZBMS

Ruth Hadfield Medical writer

Ross McLeod Observer – eSYS Development Australia

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Report prepared by:

www.mediwrite.com.au

[email protected]

0415 569 926